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Lupus is a chronic, auto-immune disease in which the body's immune system forms antibodies that attack healthy tissues and organs. If left untreated, lupus can be serious and even life threatening. Here I share how I am using my artwork and learning music to navigate me towards a simple goal of daily peace~

Bright Bird

scroll way down to view my Hawaiian photos and don't forget to feed the fish!

Thursday, August 4, 2011

When you become stricken with any illness you naturally make changes to your routine as to what gets done and what doesn't. Like getting a cold or the flu you decide if you feel bad enough to call in sick and not going to work. Errands? nah. Stay home in bed? Camp out on the couch in front of the TV? Don't do the dishes? Somebody else take the dog out....... it all changes. Did you even know how much you did in a single day? Wasn't it nice how you felt good OR didn't feel so bad all over? You ask yourself as you lay there in a heap.....and just when do I get to be me again? The day drags, the next one comes, slowly you get over whatever virus you picked up from a friend or the office or the grocery store.Now imagine just getting worse. Imagine every symptom increasing and new ones beginning. The doctor that you always felt pretty good about looks at you like you are such a faker. We won't even mention the nurse rolling her eyes as she leaves the room. How could you have ALL these symptoms? He sends you off to a specialist. For me that was the best thing my primary care doctor did for me. He knew I was in territory that was beyond his scope of testing. He had an idea that I might have Lyme disease and passed me off to who I believe to be the smartest Doctor I will ever encounter. And when even he couldn't come up with a clear diagnosis he sent me packing into the KU Medical Center and yet agreed to be my primary care doctor because he had interned with the KU Med center doctor that was now treating me. This was the luck that got me way further down the path to leveling out my illness. I had two docs that actually knew how to communicate to each other. It was the best security blanket I have ever had!As I got better and was given a diagnosis, which is a mental relief beyond all my fears to know what illness I was fighting, I settled into a life of constant change. Lupus changes inside you and sometimes takes off into a new direction. But, after this first flare -as it is called in Lupus, I was different in my viewpoint of the world and what was important to me. My priorities had been changed. This is quite common in people who have been through a serious illness, say cancer or an accident. The act of being so debilitated gives the patient a new perspective to live by. And it did for me too. When at the worst of my first Lupus attack if I had just a few minutes in the day to do 'something' I didn't clean house. And I was a Felix Unger from way back!( The Odd couple show in the 60s) Well, having two kids brought me down a few notches, but I always liked orderly and clean in my life. Instead I would go out to my Koi fish pond I had built a few years earlier and sit. Listen to the water bubbling. Heavenly sound. Watch my fish, pet them even. Feed them... admire the beauty of the plants I was tending. I just enjoyed my life in that moment. Lupus gave me a real special gift. I learned to live in the moment.

I remember when I was hosteling in Hawaii for three weeks I stayed at the Wood Valley Dali Lama Buddhist temple of Nechung Dorje Drayang Ling on the Big Island. Before I was to leave I went up to the house the last evening where I could do some laundry and the two monks in charge of the temple invited me into have some dinner with them. We had a great conversation. We had spoken earlier in my three day visit there and they knew I had Lupus and that I was looking for a healthier place to live. Kansas has an environmental trigger that sets off my Lupus. My really smart doctor has twice said to me that I will have a longer healthier life outside if Kansas. Well, that did get my attention.The food for dinner was absolutely the best I had ever eaten in my life. Perhaps it was blessed? But I explained to them how lucky I was. That got their attention. If not for having gone through the ordeal I did in my first flare I would have never been able to change my mindset to the perspective I now have. So many things changed in this new outlook, this new vision I saw of me in this world. Loosing my health was so sad. I gained a new love for time and how we use it. I learned that many people in my life really are not very nice no matter how they present themselves and to recognize the ones that are just good souls. I remembered how much I loved nature. I learned how to see life and feel it. It became apparent to me how much we just waste and are so unconnected to enjoying the simplest things as we just walk through our days.Luckily for me I can still tap into this. I can be feeling like crap or frustrated or angry or sleepy and I still stop dead in my tracks and notice the most wonderful little things-- hearing chimes or the light of a sun ray or the texture of a tree trunk.

palm tree photo

well, this sounds all hokey, for real. But it does come out in my artwork! At least I think so. And so some have told me. I try to show a softness to my images. I want to capture in my paintings that first feeling as when you look at something and it snags a hold of you and takes your attention. It isn't so consciously that I do this, I rather 'feel it' as I paint. Maybe I am tapping into that energy aura beauty of the world. I know I have no pain when I am painting or at least I should say that I have no connection to my pain, I have just the focus on my work.

simple watercolor titled Aura of the Flower

That is why maybe, if you have Lupus it would be good to find that thing that you connect to--- are passionate about as they say-- and prioritize it into your life.

Tuesday, August 2, 2011

Ah, the choices we make. No matter if they are hasty or thought out carefully we eventually get older and then wonder what we were thinking or are so happy about the choice we made. My valuable lesson is not to beat myself up about some of the choices I have made. I do and I have and I am really trying not to.
In all honesty that is a great attitude to adopt if you have Lupus or any other health issue where stress is key way into the mix.
The choice I made in 1987 to join my oldest son in his Tae Kwon Do class was to later become the trigger for me to become auto immune. To explain, Lupus needs a trigger to be set into action. This trigger is a trauma you suffer. It can be emotional, like the sudden death in a family or it can be physical such as a car wreck. In my case it was both. You can read this in any Lupus book. Which is a great help now after the fact right? How was I to know that I was one of those people predisposed to getting SLE Lupus? Would I have done TKD if I had known? And please note that the Docs won't say it out loud, but the knowledge here is that Lupus is hereditary.
So what was the trauma that triggered me? After 12 plus years of horrible injuries and emotional stress involved of doing a very aggressive martial art the real clincher for me was my master hitting me with a bamboo sword in Kumdo practice so hard that my arms were black with bruises. (and yes, I was wearing double layers of protective gear and I did go in for X-rays) My theory is that he being newly married was taking his anger at the bride out on me. I made a point to show her the bruises even though he asked that I hide them. After he repeated this bashing the next practice I never went back. I was 5'1" @ 100 lbs. and this Korean instructor was in his 60s (meaning old enough to use self control) and over 200 lbs of body building on steroids solid muscle.
So here is the physical trauma and you are thinking why this situation over the other injuries? Throw into the situation the mental trauma of having a trusted person assault you. Actually my therapist pointed this out to me.
duh Joie.
All those years I blamed myself for putting me into the position in the first place. I can hash this around in my heart and mind over and over. It isn't going to make my Lupus disappear. And it is my take on the situation anyway.
Let's go forward to my learning Taiji (Tai Chi). Ahhh the soft martial art. Actually said to be the most powerful of all on its highest level, but for you and me just the slow breathing happy one. Like doing one of the Yoga forms, Taiji is going to help you in your life and with your Lupus. It will be a good choice. Now you have to make the good choice of choosing the right instructor for yourself. Don't call me, you are on your own!

Now lets look at the situation I walked into yesterday. At a local Merc I ran into an old towney that knew me in the days when I was doing TKD. He said "are you still beating people up?" I stammered out a "no" being suddenly thrown into the past like 25 years. He said it 3 times. "yeah but you used to beat people up..." On and on. Wow, that is all he knows of me. I walked away feeling bad. And that trauma pain I previously spoke of was suddenly back in my chest. I felt rather assaulted or shame -on- me and then BINGO!.... as I was driving away I remembered! It was Tae Kwon Do training that saved my life in Hawai'i when I was beaten and raped while in a cast up to my knee and using crutches. Whoooa. What a great choice I made to instinctively use my training that I had learned while beating people up.
Yeah, I know. It is back to therapy for me and you need to find a Taiji or Yoga class......

What It Is For....

this blog is for those with Lupus lives to find answers, get perspective and laugh if they can and be brave. Then those of you that are living with a Lupus person in your world maybe you will share your compassion more easily.

Lucky 1997-2011

Hawaiian Proverb

'Ukuli'i ka pua, onaona i ka mau'i.

Tiny is the flower, yet it scents the grasses around it.

said of a small person who gives happiness to others

Rocket 1997-2011

About Me

Lupus is a chronic illness that often camouflages itself. It is up to you to see your body and what it needs to be in the presence of health. Much like a chameleon my art changes to the influences of my world and I am just along for the ride.